Deep Truths

The pain cuts like a knife. It hurts so bad that I've just become numb and accustomed to it. I'm so good at pushing it down, it's unhealthy. Long gone are the days of 'I can't wait to do this with my kids,' or 'I can't imagine having a sick child.' Now are the days full of 'oh look, he's doing something I wouldn't allow him to do for 1 1/2 years.' Time. Wasted. Worrying.

I called it protecting then, now I'm just overcome with anger, pain, sadness, and disappointment. How could I, as his mother, not allow him to be a child. And his sisters too! And still have the confidence to convince everyone I was protecting him. I was only protecting me. My heart, my aching heart. It was all a facade to protect myself. I sure put on a tough face for everyone else, my kids, my husband. But only 1 or 2 people really saw the broken me. I wish they were no more, but the nights I laid in bed sobbing still happen. More often than not, it starts when I kiss Aidan goodnight. Just tonight he was going on and on about the things he loved the most about our Make A Wish trip, his favorite people, and 'hey mommy, remember this!!!!' And I'm reminded of all the moments on that trip where i watched Aidan's face literally light up from excitement and joy. And all because I finally didn't have to protect him. He could've eaten dirt for all I cared, he was off chemo. I missed out on seeing that boys face light up in ways that I can't even describe, for 1 1/2 years, because i was scared. Shame on me. 

It is so hard to be done with treatment. And boy do I ever understand how lucky we are to still have him, and not be discontinuing treatment because it's not working. Palliative care and hospice were words that never came out of our doctors mouths. But holy moly I don't think I'll ever get over how unfair it is that this happened. Not just to my son, but to all the children affected. I lose my breath just thinking about the possibility of him not making it, or relapsing. Yet there are families who find the strength to wake up and smile, but they actually lost their child. It's a sickening perspective. 

I'm not sure that anywhere during Aidan's journey I ever stopped grieving. I just became soooo good at it that even *I* was convinced I was coping. Grief has no timeline or life expectancy. It comes with it's own ebbs and flows. Someday I hope I can finally tell someone who asks how I'm doing, that I'm starting to heal. At what point does a parent of a childhood cancer survivor EVER reach the point of not letting a relapse or new tumor growth, control their life? Maybe with time.....

The Beginning of the End: Catching Up

It's been awhile since I last let it all out in words. Mostly because the last 5 months have honestly been the worst 5 months of my life. I found a new lowest of lows, watched as my son almost died, watched as he bounced back like nothing even happened, almost lost my husband, and in the end our family took a once in a lifetime trip to Disney World--all to celebrate that little boy who puts my heart through the wringer. I am grieving yet again. Or maybe I never stopped, I don't know. 

It all started when Aidan spiked another fever on January 1st. Off he and I went to the hospital. The next day, after a series of events, his fever jumped to 105.2 and I had a really bad feeling about it. High fever + brain tumor = not good. He had a severe febrile seizure. His airways collapsed, he couldn't handle any external stimuli so I couldn't even touch him or talk to him without sending him over the edge again. It took 4 different medications and 2 1/2 hours for him to finally stop fighting. He stopped breathing and was immediately intubated and placed into an induced coma so his brain could rest.  Legitimately, the worst experience of my life. I could not stop crying. I was flooded with nightmares and flashbacks of the moment he started seizing. Hindsight is always 20/20 and I still wish I would've done things differently.  In the end, he woke up around 4 days later and struggled with walking and talking. It was scary but he prevailed! Never even skipped a beat. Unlike my heart. He has been seizure and fever free since that hospitalization. 

March 14, 2014 my sweet little hero finished his chemotherapy protocol. A day full of excitement and thrill....and terror as you realized that the controlled poison he had been pumped with to shrink the tumor, was no longer being administered and providing a sense of relief. It's an odd emotion, very bittersweet. It brings a lot of fear with it. 

April 3rd, 2014 was finally my opportunity to close the most horrendous chapter of my life. Partially. Aidan's port was removed. That port was the reason we were admitted with every fever. It was what took me away from spending time with my girls, my husband, my home. It separated my family and it never got any easier. Good riddance you pain in the ass, life saving piece of medical equipment. I took Aidan down for his surgery by myself so I really had an opportunity to be with myself and God, level things out to a point. I wanted to cry, from every pore on my body, but I held it together because the happiness far outweighed the sadness. For once. 

During all of this, I was exchanging emails with our state's Make A Wish coordinator. To send my family to the happiest place on earth--Disney World. To spend a week at Give Kids The World. It should also be known as the emotional breakdown you never expected. To watch as volunteers selflessly give of themselves to children with life threatening illnesses--humbling. The kids were amazing, too. The look on their faces when they saw another character they loved just filled my eyes with tears. In fact, the first full day we were there Mickey Mouse himself was at the village. When he spotted him, Aidan took off running towards him exclaiming, 'Mickey, you're my best friend!!!'  Trip=made. There are so many memories to share from the trip but I'm still taking it all in myself. The people. I wish I could've put them in my pocket and brought them home with me :( there's a definite void in my heart now that we're home. And we will definitely be a Welcome Back Family and volunteer for a vacation. 

Be still my heart, as we embark in this new journey. A new chapter. A new opportunity to pay it forward after being blessed by multitudes of people over the last year and a half. To encourage, to provide hope, to comfort, to be a living testimony to God's work in our lives. And when all is said and done and I've kissed my babies goodnight, I've cried my tears for that day, I am still left saying thank you God for the journey. Thank you for your work in me. Thank you for knitting Aidan together the way you did and giving him to me, because I wouldn't want him any other way.